Translated Titles

Narrative of advanced cancer patients, families, professionals, and others on mutual suffering



Key Words

整體苦難 ; 苦難與共 ; 敘事研究 ; 世代群組 ; 晚期癌症病人 ; total suffering ; mutual suffering ; narrative research ; cohort ; advanced cancer patient



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Chinese Abstract

癌症晚期病人面對迫近的死亡陰影與多重的生理症狀,遭受身、心理社會與靈性複雜多層面極為艱鉅的「整體苦難」。若未能辨識病人所承受苦難,則難以適切提供「全人照護」中的靈性照護,更可能成為另一個病人受苦源。本研究採敘事研究方法論,以16 位病人為核心,世代群組方式邀請不同親疏遠近的家屬、他人與專業人員共51 人參與研究,分析62份苦難敘說文本。希冀理解晚期癌症病人的苦難,他們及其家屬、專業人員與他人如何述說與面對,進而彼此間的苦難相互影響。研究結果歸納出四大苦源- 困(困於肉軀、困在當下、困囿病榻)、變(預期的明天變調、外觀慘變、角色丕變)、斷(斷了盼望、斷了掌控、斷了關係)、多(聽太多、思慮多、愛恨情仇冗多)。敘事者在面對苦難時,處於變動扭曲的時間軸上- 過去(陷溺往昔、不堪回首、往事已矣)、現在(無視現下、如履薄冰、困耗於現況、把握當下)、與未來(遑顧下一步發展、結局已定、抗拒走向未來、死後有盼望)。與天、人、物、我關係中,則分別有助力及阻力影響敘說者面對苦難。世代群組的資料呈現出苦難相互影響之動態,並分析出苦難與共齒輪模式。病人以「病」為圓心,「身體受苦」為齒輪軸心半徑,「面對苦難的能力」為齒輪半徑,開始受苦轉動。家屬因「關係」而存在,「與病人的心理距離」成為半徑,藉由「愛」與病人鏈結彼此影響。專業人員以「職責」為軸心,半徑為:專業涵養加上面對苦難的能力,專業人員的「慈悲」與病人對其的「信任與親善關係」是彼此間的鍊結。本研究所得之結果,希望成為未來臨床醫護人員在作病人、家屬及團隊同儕的靈性照顧,及民眾生死教育之背景知識。

English Abstract

When advanced cancer patients are faced with the darkness of death and multiple physical symptoms, they may undergo complex difficulties that could be described as “total suffering,” which involves multiple levels of physical, psycho-social, and spiritual pain. Failure to identify a patient’s suffering will result in failure to provide appropriate “total care” and “spiritual care,” which may become yet another cause of patient suffering. The present study was conducted through narrative research, with 16 patients serving as the core of the study. A total of 51 participants also consisting of close and distant family members, others, and professionals were invited to participate using the cohort method. A total of 62 texts describing the suffering of the participants were evaluated in the hopes of understanding how the suffering of advanced cancer patients, their families, professionals, and others is described and dealt with. The results indicated four themes: stagnation, change, loss, and overload. When faced with suffering, the texts’ narrators lived in a state with a disfigured and twisted time line. The cohort information shows how the suffering of many can mesh together, indicating a gear-like apparatus of mutual suffering. For patients, the “disease” is the core, “physical suffering” is the core radius, and “the ability to handle suffering” is the gear radius. The gears are set into motion by suffering. The influence of family members is due to each individual “relation,” with “the distance between the patient’s heart and that of the family member” as the radius, and the family members therefore able to interlink with and influence the patient with love. The professionals’ core is “duty,” and with “professionalism and the ability to face suffering” as the radius, professionals are benevolent and interlinked with the patients through “trust and a relationship based on goodwill.” We hope that the study results can be implemented in the future as part of clinical medical practitioners’ background knowledge on spiritual care and death education for patients, families, and co-workers.

Topic Category 醫藥衛生 > 社會醫學
醫學院 > 健康照護科學研究所
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